Brain Stem Glioma

I am a 43 year old mother of 3 boys ages 12, 10 and 6. During my first pregnancy in 1999, I experienced pin & needle sensations in my hands and down my legs. The sensation lasted in my legs for approximately 6 months after delivery, and periodically resurfaced in my hands throughout the years. In 1999 I was sent for an MRI, no abnormalities were found. During my 2nd pregnancy in 2001, I experienced the same pin & needle sensation through my hands and legs which stopped shortly after the pregnancy. By the end of my 3rd pregnancy in 2005, I started to have constant headaches. I went for an MRI a few weeks after delivering my 3rd child. They found a large cyst in my right maxillary sinus, but radiologist’s report indicated that the rest of my brain was normal. I suffered through the headaches for 6 years assuming they were due to the cyst and bad allergies.

Between December 2010 and April 2011 the headaches became more severe. I called my ENT to get an appointment to re-check the cyst which I believed was causing my problems. The doctor ordered an MRI with contrast. A tumor was detected on the brain stem. I was referred to a neurologist. On that visit I brought my new MRI images from 2011 and my MRI images from 2005. (Don’t ask me why I brought them. I just did.) During my initial consultation the doctor looked at the 2005 films and immediately saw the tumor on my brain stem. So I have been walking around with a tumor on my brain stem for at least 6 years – living a very active normal happy life. As per the doctors visual comparison of the tumor from 2005 to 2011 there appeared to be little-to-no growth. I do believe the tumor was starting to grow in Spring 2011, because the periodic numbness in my fingertips extended to my entire right hand and remained constant. I honestly do not know if my headaches were due to the cyst & allergies or the tumor. I have not had a severe headache since the spring.

I have done some investigating since this discovery. While my mother was pregnant with me, she was exposed to the German Measles. I have a physical deformity on my right ear, but other than that I have been normal & healthy. I read about a study in the British Journal of Medicine done in the early 1970s that showed a correlation between children diagnosed with brain / spine tumors who exposed to Influenza and the German Measles in utero and shortly after birth. Since brain stem tumors are extremely rare in adults I am wondering if I have had this tumor my entire life. I am suspecting that the tumor may have grown through the hormones of each subsequent pregnancy. The brain stem tumor in located on the right side of my brain stem and extends down into the spinal column, the cyst in my maxillary sinus, ear deformity and symptoms of numbness are all located on the right…perhaps all just coincidence. I realize it is a moot point now, but interesting to me nonetheless.

The neurologist ordered blood tests for demyelinating diseases which came back normal. I have had PET scans and Spectroscopies of the brain and spine. The tumor did not enhance. They think it is a low grade glioma. After several opinions, it was decided that the tumor is inoperable and a biopsy would be too dangerous. I went through 27 IMRT radiation treatments ending on 9-22-2011. I am at 16 days post treatment. I have nausea, and shooting vibrations that feel like electrical shocks that go up and down my spine. That is exacerbated the constant numbness and pin & needles in my right leg and foot. My right hand is also weak with numbness, but not as severe as before treatment. I have a treatment evaluation with the radiation oncologist on 10-17-2011. Then I will have a follow-up MRI in 2 months (approximately 11-22-2011).

I haven’t seen anyone on line with a story similar to mine, so I figured I would share it.